Day 3 -- 1995 PAN Public Policy Forum -- Wednesday 17 May
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Report from the National Press Club (14th Av & F St),
Edward R. Murrow Room (13th floor)
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>>>>>>>>          "Invisible No More"         <<<<<<<<<<
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FOLLOWING: Summaries of most of today's presentations.
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DR.OLE ISSACSON, Harvard Medical School, American Society of
Neuro-transplantation: We are on the threshold of a treatment for Parkinson's.
Pallidotomies have been done for 30 yrs. L-dopa revolutionized PD treatment,
but proved to be limited, thus a return to interest in surgical techniques.
        Showed slides of brain tissue replacement (transplantation) and the
successful results. No one would have thought this was possible a few years
ago. Many scientists still doubt that it's possible to regenerate brain
tissue.
        The strategy is to get the brain to again produce its own dopamine
precursor (tyrosine-hydroxylase, TH) by transplanting live brain cells, or TH
genes into the substantia nigra. Brain cells from both human fetuses and pigs
have been successfully used. Slides showed that in successful cases off-times,
dystonia, and dyskinesia dramatically decreased during the first year.
        A normal person loses about 40% of their brain cells by age 60, a
Parky loses 80%. Of the 110 million cells in both halves of the substanta
nigra, only about half, 1/4 of a milliliter -- less than the tip of your
little finger --  are replaced in a transplant. Compared to the whole brain,
this is 1/100th of 1 millionth of all brain cells.
        In gene transfer therapy a benign retro-virus carries the TH gene into
the substantia nigra cells to join with the cells' DNA to begin producing TH,
which converts to dopamine.
        Dr. Issacson says that for the first time in 15 years he is optimistic
that a cure can be found in 5 years --depending on funding, from 3 to 10
years.
        Most academic labs, like his, receive $300-500,000/year to support a
staff of 12-15 on low wages. They do research for about 1/2 the cost of
private labs. Half of their funding comes from NIH the other half from private
sources. 90% of their grant requests are rejected. They could really use 2 to
3 times their current funding. Much untapped research talent and ideas are
lost due to lack of funding. He knows that several French labs have closed --
funding is more difficult in Europe. Very little unnecessary research
duplication occurs anymore.
 
QUESTIONS:
        If funding wasn't a problem, what research paths would he pursue?
Their current path -- neuro-replacement and brain cell culturing -- but a much
larger effort.
        Why don't transplanted cells die of PD? They do, but the PD brain cell
death process is so slow that it would take many years to lose the cells that
have been restored.
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JOAN SAMUELSON: De-Briefing - You wanted an NIH tour, not a Capitol tour. And
few toured the White House because you were visiting congressmen.
 
Comments from capitol visits:
- most all congressional offices said that PD advocates are not as visible,
aggressive, vocal as the Alzheimer's and AIDS advocates.
- It's better to be "off" when you visit so they can see the effects of the
disease. Eat a high protein lunch, then visit. (much laughter)
- Better to visit at home office, Washington is too busy.
- Administrative aids are very young and see us as just another disease. They
are kind and courteous but not the guy you want.
- Need to know the history of your congressman (whether they have PD in their
family, friends, etc.), how they voted on health issues -- Alzheimer's, AIDS.
- Ask that congressman or staff to read your hand-delivered letters out-loud,
it gives them something to do and definitely gets their attention and memory.
- Give them a WIFM (What's in it for me.) reason for co-sponsoring -- lowers
the budget by eliminated PD expenses.
- Wish Billy Graham would become PD spokes-person. Know that Muhamad Ali has
agreed to do public service announcement. Look for well known parkys at home
to help.
- Most offices don't have a personal contact, don't intimately know someone
with PD. They really aren't familiar with the disease.
- Often offices aren't concerned about health care at all.
- Aids want to see the researchers, those to whom the money will go, for a
first hand report. Take some with you from local labs, or when they are
visiting your area for PD conferences.
- A congressional office may try to give you the run-around by assuming that
you don't know the system and that they aren't the one to talk to. They might
try to refer you to another committee. It's their vote you want, not someone
else's.
- $26/parky is an insult. You can't get a month's meds for $26.
- PD lapel buttons are valuable because people ask you what PD in a red circle
crossed out means -- "No more PD". Most people we met on the street thought it
was for "No more police departments". They asked us, are you part of the
militia underground?
- Reports - & + from New York, Arizona, Texas, Illinois,..
- How pushy should you be? As pushy as you are comfortable.
- Passing the Udall bill is not absolutely necessary to increase funding for
PD, but it provides a guideline and emphasis for PD. The Appropriations
Committee can increase PD funding this year if they chose to. NIH can increase
the PD funding share of their budget, if they chose to. We can persuade to
chose to.
----------------------------------------------------------NETWORK DATABASE:
PAN will keep and update lists of the visits on all congressmen and their
current position, PD history, problems we have with them, etc.
        Always summarize in writing your congressional visit, what you
learned, and send it (fax, e-mail, phone, mail) to the PAN office.
CONGRESSIONAL CONTACT FORMS were handed out (more are available from PAN).
        To get involved, ask PAN who your area coordinator is. Most of the
states now have coordinators. If your state doesn't, then you can volunteer.
The list of state assignments will be posted later. Independent individual
lobbying efforts are OK, but the offices respond so much better if they see
that we come as a unified group with little duplication of effort, except when
many letters or pill bottles are needed to get their attention just to hear
us.
        Sheila will coordinate, update, and respond to all data needs. A
monthly summary of who's a co-sponsor, problems with who's not, progress with
the committees, etc. will be posted to the PARKINSN listserv and mailed and
faxed to all area coordinators and to whomever area coordinators specify.
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COPY ALZHEIMER's SUCCESS:
Many congressional offices tell us that our presentations are weak -- that we
don't have the impact they got from Alzheimer's and AIDS lobbyists.
 
Here's the evidence (from Joan's graph):
 
Research Expenditures for PD and Alzheimer's, 1980-95
 
                        $ Millions
     |$0------------|$100----------|$200----------|$300
1980 |A  13
     |P   5.2
1985 |AAAAAAA  52.5
     |P   6.4
1990 |AAAAAAAAAAAAAAAAAAAAAAAA  146.9
     |PP  24.9
1995 |AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA  311
     |PPP 26.8
     |$0------------|$100----------|$200----------|$300
 
In 1980, just 15 years ago, the ratio of PD to Alzheimer's research funding
was close to the ratio of patients -- 1 to 2. With successful lobbying,
Alzheimer's now gets over 11 times what PD gets per year, 5 times more per
patient. Scientists tell us that a cure seems so close that it may be found
within 5 years by just doubling the research amount.
 
A tested method to definitely get attention for the Udall bill and urgency for
PD research is to send your representative an empty plastic pill bottle in an
envelope. On the outside of the bottle is this message label:
  ----------------------------------------------
 |  To: ___(your elected official)___________   |
 |  PLEASE VOTE FOR THE MORRIS K. UDALL         |
 |  PARKINSON RESEARCH AND EDUCATION ACT        |
 |  to provide funding to find the cause, cure  |
 |  and better treatment for Parkinson's        |
 |  disease which causes prolonged physical,    |
 |  emotional and financial strain on           |
 |  patients and their families.                |
 |  FROM: ___________________________________   |
 |  Address: ________________________________   |
  ----------------------------------------------
 
Saul Siegel (Madden Foundation, Ohio) reported that they mailed 1,000s of
these in Ohio to lobby for Alzheimer's. It really got the attention of all
elected officials who would listen to anything to stop being bombarded with
pill bottles. Some people were creative by putting things (messages, treats)
in the bottles.
 
Ask the PAN office to send you labels ready to go -- . for your family and
support group. Call 1-800- 850-4726
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UDALL LOBBY GOAL:
Majority of co-sponsors in House  = 218
Majority of co-sponsors in Senate =  51
 
TO REACH GOAL: Need 36 new co-sponsors/month in House and 8/mo in Senate
 
CONGRESSIONAL YEAR ENDS: in October.
 
TIME LINE:
- can do this this year if Rep Bliley will move it in House Commerce
Committee, Senator Kassebaum (R-KS) will move it in the Senate Labor & Human
Resources Committee, and Senator Spector (PA) will move it in the
Appropriations Subcommittee on Labor, Health & Human Services, Education.
Senator Hatfield will move it in the Senate Appropriations Committee.
- if they don't, we have next year, and the next...
 
COORDINATED STRATEGY:
- know who supports/doesn't support the bill
- invite congressmen to support group if the support group can't go to them.
Tell your stories of life with PD.
- Senate must lead in bill. If Senators must start campaigning in September.
Should focus on Senators first.
- send 3 letters from yourself, family, support group -- to 2 Senators and
Congressman.
- send 3 letters to Bliley, Kassenbaum, and Spector
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GRASSROOT PLAN: Your participants who struggled to get here from around the
country, representing 1,000s of parkys, stayed up late each night assembling a
workable strategy to lobby congress. 20-30 of us debated issues Monday and
Tuesday 'til past 10. The result was today's presentation to PAN (Joan and the
board of directors).
 
JIM CORDY (Pittsburgh), BARRY GREEN (Texas) and BOB MARTONE (Houston) led the
presentation at the end of this mornings meeting -- a proposal in 2 parts:
 
1. Move that there be one PAN coordinated lobbyist per elected official. Need
435 + 100 = 535 lobby efforts.- start with who is here
 
2. Create a pyramid lobbying structure, with several (4?) regional leaders for
the country (west, midwest, northeast, southeast). Fund a full-time PAN
database/communications coordinator (Sheila) and fund the regional
coordinators as need. In some regions, existing PD organizations may take on
the staffing and expenses to lobby all or some states, in others they may not.
We'll soon find out. If they don't PAN will.
 
NOTE: A similar plan resulted from last year's Forum but was only partially
acted on. A few regional coordinators accomplished quite a bit. But 32 states
were uncoordinated, and the national PD organizations did not whole heartly
respond. This year's plan emphasizes ACTION NOW. How can we get the job done?
Hire more full time help and commit to action and follow-up.
 
MOTION PASSED unanimously, 1 abstention from vote (APDA), but not from
process. APDA committed to help lobby.
 
FOUNDATION SUPPORT:
DINAH ORR, Parkinson's Disease Foundation (PDF), Ex. Director: $50,000 for
1995 PAN campaign.
 
JOEL GURSTEL, APDA Long Island and
PAUL SMEDBURG, APDA Washington lobbyist.
American Parkinson's Disease Association has 90 chapters, 51 referral centers.
Will pay for own mailings but can't yet commit $ to PAN until board meeting.
But committed to help lobby.
 
ALSO: $25,000 and $50,000 from 2 other foundations.
 
JOAN SAMUELSON: PAN will ask for funding for another staff person and will
reimburse regional coordinators and their helpers for all receipts for
mailings, phone, travel, etc. applied to Udall bill campaigning.
----------------------------------------------------------LOBBYING AND
NON-PROFIT LAWS:
A non-profit can lobby up to 20% of its budget. Any individual can lobby all
they want. Can file as 501(h) to allow non-profit to do major lobbying.
==========================================================NEW BOOK ON PD: "The
Case of the Frozen Addicts"
How the solution of an extraordinary medical mystery spawned a revolution in
the understanding and treatment of Parkinson's Disease.
by J. William Lanston, MD, and Jon Palfreman.
 
Inside dust cover: In the summer of 1982, hospital emergency rooms in the San
Francisco Bay Area were suddenly confronted with mysteriously "frozen"
patients -- young men and women who, through conscious, could neither move nor
speak. Doctors were baffled, until neurologist J. William Langston, recognized
the symptoms of advanced Parkinson's disease, administered L-dopa -- the only
known effective treatment -- and "unfroze" his patient.
        Dr. Langston determined that this patient and five others had all used
the same tainted batch of synthetic heroin, inadvertently laced with a toxin
that had destroyed an area of their brains essential to normal movement. This
same area, the substantia nigra, slowly deteriorates in Parkinson's disease.
        As scientists raced to capitalize on this breakthrough, Dr. Langston
struggled to salvage the lives of his frozen patients, for whom L-dopa
provided only short-term relief. The solution he found lay in the most daring
area of research: fetal-tissue transplants. The astonishing recovery of two of
his patients garnered worldwide press coverage, helped overturn federal
restrictions on fetal-tissue research, and offered hope to millions suffering
from Parkinson's, Alzheimer's, and other degenerative brain disorders.
        This is the story behind the headline -- a spellbinding account that
brings to life the intellectual excitement, ethical dilemmas, and fierce
competitiveness of medical research. "The Case of the Frozen Addicts"
illuminates how the solution to a baffling mystery of the brain's chemistry
opened a new frontier in medicine and restored life to people without hope.
 
J. WILLIAM LANGSTON, MD, is president of the Parkinson's Institute in
Sunnyvale, California, and director of its basic research programs. An
internationally recognized authority on Parkinson's disease, Dr. Langstom is
also the editor of the journal Neurodegeneration, and chairman of The
Parkinson's Epidemiology Research Committee.
 
JON PALFREMAN is an award-winning writer and producer of medical and
scientific documentaries. He is a senior producer at WGBH television in
Boston.
 
Published by Pantheon Books, New York.
ISBN 0-679-42465-2  (sugg retail: $25 USA, $35 Canada)
Check your local bookstores and/or libraries.
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NOTES:
1. Again typed by A.J. Conovaloff on Margaret Monty's and Bob Martone's
laptops, posted by Bob (Board member, Houston, TX, Area Parkinson's Society).
 
2. A colorful PD informative computer presentation/slide show for MS-DOS has
been prepared by Jim Cordy using PAN and other data, and the program Lotus
Freelance. We showed the program on Margaret's and Bob's color laptops. The
presentation is excellent for support group advocacy education. It can be
viewed on a color computer, as overhead transparencies, color slides, on
paper, and, we hope, on the WWW. Copies from ([log in to unmask]), or Jim
Cordy, 412-521-9584 (PA). It helps if you'd send a blank disk and a return
diskette envelope, or $2-3 to cover costs.
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